
My friend Heather was diagnosed with Crohn’s disease when she was 18 years old, after she lost ~80 pounds in less than a year. She was so ill that she ended up with an ileostomy (meaning, everything from the middle of her small intestine to her rectum was removed) at 21, was healthy enough to get married at 22, and went through nursing school and had two healthy pregnancies. In the last few years, however, she’s been through several new flareups of her disease, and has tried every therapy and drug available to combat her illness. For the past year she was out of work on disability leave, being fed pink goo through a central port 12 hours a day, but recently had to return to work in order to keep her benefits. Then, her husband was laid off of his job of over 10 years.
A few months ago, Heather had to take a chance on one final experimental medication, one that had a nonzero percent chance of killing her: Tysabri has been known to make patients susceptible to contracting progressive multifocal leukoencephalopathy, a degenerative brain disease. Luckily, so far she seems to be encephalopathy-free but the first couple of Tysabri infusions did make her ill enough to be hospitalized for a few days. Recently, she was given the news that the Tysabri isn’t helping her Crohn’s get any better – but she’s not getting any worse, either. She can only be on the Tysabri for a year and after that there aren’t any more treatments or drugs to try.
A couple of weeks ago, Heather was asked to be the guest speaker at a local walk to raise awareness and funds for Crohn’s and colitis research, honored as a “local hero.” The walk was sponsored by the Crohn’s and Colitis Foundation of America, and the funds raised by Heather’s team and the other teams walking in the event went directly toward research for new therapies. Heather has hope that something new will be discovered in the next year or so that will allow her to keep having reasonably good quality of life so she can continue to be a good nurse for her patients, a good mom to her a kids, and a good wife to her husband.
Dan and I raised over $200, Heather’s team of 40+ people raised over $2,700, and the whole event raised over $17,000 toward education and research to fight these terrible diseases. We attended the CCFA’s “Wine Country Take Steps for Crohn’s and Colitis” event a couple of weeks ago and here’s some of the photographic evidence.

Walk start/finish

A band played some stuff. I wasn’t paying all that much attention to them.

It wouldn’t be wine country without a winery sponsor. Korbel is local and pretty good, and I wasn’t about to pass up free champagne.

They even made their table look pretty.

Here’s Heather giving her speech. I wish I had video; it was a great speech, very Heather – as a nurse, she never shies away from being completely frank and honest about health- and medical-related stuff. I learned during her speech that the eye infection she had for months when she was 18 turned out to be the first sign of Crohn’s disease. She’s been actively ill with her disease for 14 years, but the past year has been some of the worst of it.

After Heather’s speech, we walked two miles around downtown Santa Rosa. We were given maracas as noisemakers and several of the teams held banners. Heather’s team was the largest; I think over 40 people were there to support her. Occupy Santa Rosa was also going on at the time, and we got an awful lot of honking as cars drove by, which I think was perhaps because they thought we were part of that group.

Here’s Heather finishing the two-mile walk. Considering there have been many days of hospitalization in the past year and many more days when she could hardly get out of bed, a two-mile walk is a huge undertaking for her – but she did it!

Me with Heather

Official photo taken by event coordinator. Can you spot us in the crowd?























































